More Tests

[Super_sally888]

Hi All,
Saw my endo today. He called the neurologist and she will see me today.  She wants to do LP.  Oh how exciting. That won't be today.  They are testing for TB (skin test) as that is endemic here (in case it could explain the flushing)... though I had BCG vaccine so don't know if that will affect anything.
Also if the TB test is -ve they want to do excision biopsy of swollen lymph nodes in my neck.....
So now they want to get into all the invasive testing!
Wish this was over and I could just ignore it and it will all go away.....
Anyway, I am pretty ok. Can live with these symptoms for now.... if they stay stable...
Sally

[uk2]

Hi
Been following your posts. So pleased you have found some answers at last and its such a credit to you and some of your doctors that they didnt give up. Good Luck with your progress in this and im sure we will all miss you and still be gratefull for any advise you can give on this site as you have alot to give.

Take Care

[Super_sally888]

Hi Quix,

According to Doc Mike positive PPD (mine is very positive - about 22mm and still growing (am still in the 48-72 reading period), 10+ is positive here) is always treated as meaning active infection.

He thinks TB could explain some/many of the symptoms I am having, particularly the flushing and even the burning sensations.....  I did some research and extrapulmonary TB (assuming it is that - my chest x-rays have always been clear - I guess they'll check again now) can present with vague and non-specific symptoms, including neurological ones, and can take ages to diagnose.... And any ongoing infection could stimulate the immune system, i presume, resulting in increasing allergy responses.. Visual symptoms are unexplained.... but will be interesting to see what happens.

Hmmmm...... a first?  MS-like symptoms explained by TB?  Maybe??

The neurologist today offered me antidepressants/ anti-anxiety meds, though she was very nice about it. Strongly recommended I continue with high dose B vits (prescribed) and see her in three months.  This whole situation is anxiety provoking (as this all affects MY life and how I feel, energy etc), particularly having no explanation and ongoing super weird symptoms, but I don't think more meds are in line.  I told her so and she agreed.  She is reasonable and I am happy stay in touch with her and see what happens with the TB approach.

Dr. Mike will continue to monitor me (I am glad he did not give up on me and believes in my reported symptoms - and there have been abnormalities, and continues to research) for thyroid and endocrine stuff, including CK-MB.  He is very happy that we have something concrete to work with now. I am so grateful to him.  He has passed me back to my allergologist (who is also a great dr.) for whatever further investigation  /management is appropriate based on positive PPD.  I am ok with that too.

So looks like I am not appropriate for this forum for now.  However, I will lurk for a while and update, if ever appropriate.  Or reply to anyone if ever I can provide a decent response to keep your workload down.  

Thanks so much for your input and support.

Sally

[Quixotic1]

Well, you certainly seem to be getting farther from an answer.  Maybe you did have some horrid, infection.  I looked up BCG to make sure, but what I remember is that BCG in the distant past will have little or no effect on the PPD now.  If it is + now I think they will check the CXR.  If that is clear - well, we'll have to see what the rec's are in the Phillipines.  Here you would get 6 to 9 months of INH.

Good luck, I'll pet a kitty - some random kitty for you.  Quix

[Super_sally888]

Hi,

You have been busy on the board lately.

Repeat VEP yesterday was apparently normal. This is good! But, I'm still not getting anywhere.  I'm to see the neuro this afternoon to discuss.  

They did a ppd test (for tb), due to be read this afternoon / tomorrow morning.  It appears that it may be positive - the white lump in the middle of the red may be a bit more than 1.5 cm (have to wait for the official reading, I don't know how to read or their criteria).  I had BCG vaccine in high school, 20+ years ago. So this maybe could affect.  Always clear chest x-rays.  The last one about 6 months ago.  I guess more tests will be happening because of this.

Could this be some weird infectious thing?  I saw your comments on Lyme.  That is not present over here.....  TB is endemic here.

I have decided to stop all meds other than thyroxine to see if anything is drug related (this is with the agreement of my allergy dr.).  Started that this morning.  Have drugs with me in case of an unexpected allergic reaction to anything or asthma attack.

Today burning is less, but am having generalised left sided tingling on my head, face: mouth/lips, upper body (this is the same side that they did the skin test), and lesser on both legs ... visual stuff continues both eyes flashing ...   am also itchy...  I will tell all this to the neuro when I see her this afternoon. I feel like such a wierdo.

Psychogenic? Seems we don't have enough physical signs to base anything on.  It seems I can't trust my body.  How can I be feeling like this when there is apparently NO significant findings??  

Don't bother to respond yet - others have more pressing concerns.  I will update further after I see all the doctors again!!!!

Sally

[Super_sally888]

Oops.  Meant regular period, not symptoms!

MRI report said bulging disc not impacting on spinal cord.  These finding could just be incidental.  I do have neck pain from time to time.... but it is manageable with posture, etc.  

SSEP was normal.

[Super_sally888]

Quix

Your cats sound wonderful! They are such an entertainment and a joy to have around. I have two of my own - they are about 9 now.  Greta Garbo ('cause I picked her up next to a garbage can when she was a tiny kitten).  She is a grey stripped cat and quite standoffish.  I have to pay attention when I pat her becuase although she loves to be patted, she can bite or scratch when she's suddenly had enough.  Then I have Dopey Daisy, who is a calico cat (she is the daughter of a stray cat that lived near my house at that time).  She is fat and very friendly.  She grabs my arm with her paw to pull me over to pat her.  She grooms me when I pet her (licking and nibbling).  She also comes and bites my arm when I sing.  Poor cats have to compete with the dogs.  Racoons sound so cute!  I come from an animal loving family.  Three of my sisters live on small farms, with lots of animals...

I am 36, nearly 37 (in a few days).  Dr. is asking about menopausal symptoms... but am still having regular symptoms and test results last july were Prolactin (F) 579 (102-496 uIU/ml), LH (luteal) 8.75 (1 – 11.4), FSH (luteal) 3.95 (1.7 – 7.70), Estradiol (luteal) 67.01 (43.8-211 pg/mL).  My Mum didn't have menopause till she was in her late 40s.... my twin sister is still ok.... having babies....

She is considering allergy as possible, though unlikely given the antiallergy meds I am on.... drug reaction (my allergy dr already considered that and thinks unlikely)...

Reflexes are normal.  Some minor balance problems (I start swaying when I close my eyes after about 10+ seconds, though I can self correct and won't fall), same goes for marching in the spot with eyes closed.  I also find that I trip on the floor regularly (like my foot doesn't lift enough to clear the floor - I thought it was a shoe problem, but guess it is me)...  babinski I don't know.... negligent neuro's resident did it through socks in a dark room.... negligent neuro didn't do any hands on tests other than to see that I have tremor.... Oh and he did charge.  A lot considering he did nothing AND didn't even look at the results of testing or bother to discuss with me! The same as my Endo, who really earned what he was paid! This is the endo who wasn't happy with Negligent Neuro and referred me to this new one.... who is a sweet, very smart, younger lady (probably similar age to me).

New neuro hasn't done detailed examination.... she is focusing on the VEP and hearing test abnormalities, tremor, and burning sensations...  She says in her experience in Philippines most of her MS patients don't have positive findings on LP.  Therefore, even though she told my endo that is the next step, she will not do it unless she really thinks warranted.

Will give more feedback after I see her today........  

Hope you're feeling good today.

Sally

[Quixotic1]

You're certainly giving the doc's there a workout on their medical degrees!  How old are you again?  Has anyone (specifically Endo) looked at your LH, FSH, and Estradiol?  Could you be having hot flashes?

The old careless neuro never even saw the VEP?  If he billed for his services, not only was it not professional, it was not ethical, and was fraudulent!  

When my neuro looked at the lower resolution images of the spine MRI and said there  were  "suspicious" areas, what he point out to me were spots that weren't the same shade of gray (and were a little darkly speckled) and no sharp edges, as the cord surrounding.  Then on the 3T machine those same areas had clear edges with increased signal strength.

So there neuro would consider you diagnosable for MS with one more piece of paraclinical evidence?  Have you had the SSEP?  With all you have been through I'd push for the LP, but that's just me.  Remind me, do you have any abnormality on neuro exam?

I understand about the waxing and waning, but my symptoms don't come and go at all.  I have had isolated symptoms that did, but of the 10 things that have bothered me, 8 are alwasy present and accounted for.

As someone who did her post-doc work in Allergy/Immunology, Allergy does NOT account for anny of the symptoms I've been concerned about from you, does not speak to the lesions in the brain.  A drug reaction ( what are we talking about here?  hives, rash, joint pain, fever?)  What kind of drug reaction is she thinking?

Does the bulging disc actually impinge on the cord?  Because, as you read here, bulging discs are commonly assymptomatic.

Maybe when she looks at the MRI's she'll decide the lesions aresn't lesions.

I have not seen evidence that the EVP ever reverts to completely normal, but anything is possible.  Remyelinated nerves usually continue to show slow conduction velocities.

My new kitten is a joy.  She clearly is going to a sleek, long rangey cat and will look like a bengal.  Whe is very vocal and has won everyone , but the Queen Mother over.  Her name is Clyde, and if you say her name in conversation while she sleeps, she'll rouse with an inquiring chirp.  The Queen Mother is my 12 yo Fawn Abyssinian (Abby) who is bonded to me at the soul.  She is always close, especially if I feel bad.  The other two are a gorgeous, verylong haired, silky Tuxedo, Trax, who is now 17mo old and his partner in crime, Tony, who is a big, lovable lug of a long hair mackerel tabby.  He's a lover not a fighter.  Last Friday we had to put down my beloved Amy, a 13 yo Burmese.

My four baby raccoons have learned to let me know at the window when they need more kibble.  I put my nose down to the screen and all four little faces rush over and trill at me.  They are so sweet. I never touch them, but I have had one or two families living under my front porch since I moved in here two years ago and the neighbors say, it's been at least four years.

Well, all the news that's fit to print.  Quix

[Super_sally888]

Saw the neuro.  She called the dr. that did the VEP to ask what he recalled.  Turned out he recalled nothing because he never saw the test done or results, because the technician did everything.   Hmmmm - that was not very professional!

She reviewed the cervical mri and explained what she was seeing.  Said some lighter lines showing, but nothing clearly diagnostic.

So she would like to repeat the VEP to see if it is still abnormal, and she would like to be present when it is done (tomorrow).  Hopefully is improved/ negative.  She is kind of reluctant to do LP if she can make a diagnosis without it.  She said that LP if positive confirms the diagnosis, but if negative doesn't disprove it and she would prefer to diagnose on different basis than doing LP.  She also asked me to bring all the MRI done previously and she will take a look again.

She is looking at various possible diagnoses: allergy (though unlikely given the meds I am on for antiallergy), drug reaction, nerve compression at neck (there showed bulging disc on MRI, though she acknowledged that didn't explain the leg symptoms. Could be incidental finding, could explain the headaches.  Other?  She said MS is possibility, but she would expect the symptoms to wax and wane more than they have so far...  it also doesn't explain the flushing...

Anyway, I warmed up to her a lot more this time.  I think this lady is good and hopefully will see where this goes....